Hi,

Several of us here mentioned it, and I am sure that Mary will also add her diet tips as well, although they are similar:

Here is what I would recommend: no GMOs, no processed foods, no chemicals, only drink water or coconut water and tea...I am on a Raw Vegan diet, but if I go out I will eat a Vegan meal...I avoid dairy and all animal products. If you can do Raw, I highly recommend it, as your energy level will be off the charts.

Avoid sugar and bad fats...especially avoid fake sugars and foods labeled "low fat", which means more sugar and sodium.

I take no medicine for PTC, although I have been told that I have a "mild" case, whatever that means. But I hate how Diamox makes me feel, so I just get my eyes monitored. Now, that does not mean I am headache free (yet--fingers crossed and hands in prayer mode), but I hope to be.

Good luck!
Angela

Thanks so much. I'm showing how little I know here but what is GMOs? Wow- big diet change. I've given up sugar and don't do the substitutes although I do relapse every now and then and have a sweet. I thonk it's tome to add some changes. Thanks again.

I am almost to 100 pounds weight loss total, 50 since january 1st. they have done study after study and writing things down makes a huge difference no matter what you do. Do not try to get rid of every 'bad' thing in your life at one time, its not going to work. decide to do something and fulfill that goal. if you get rid of a bad habit like brownies or pop find something to have instead of the bad thing thats a 'good' thing. Just pick something little and start there...just dont overwhelm yourself

GMO is genetically modified food---if it's made in a lab, I won't touch it. The only wrapper should be from nature, no boxed food. :-)

I love knowing that some are able to handle this condition with diet and weight loss. I want off Diamox ASAP because of all the other issues that it can cause.

I don't think it's a realistic option to stop Diamox right now because of the threat to my eyes but maybe after I've had some weight loss and have stabalized symptoms. Encouraging!

Not sure: good for you hot momma! 100lbs, now thats some dedication there sista. How are you feeling now?
Hmmm my diet, I have found that when my HA's do kick back up I have to look at my activity and what the heck I ate. Sitting at the puter desk kicks me arse badly. I went to pain management yesterday cause the NS sent me there. Since my paps is resolved completely, and the Chiari/cerebellar herniation shrunk, they now tell me I have the spine of a 60yo, well no shit sherlock. I have been saying this forever! So this is why I hurt so much and the puter and other things set it off. Off point, back on,....
So I just posted this in JT1973 topic, I do everything I can to eliminate naturally, being backed up really messes me up, I get the whoosing, HA, feel like death, you all know the story.
No canned anything, boxed anything. I try atleast. I only have tiny bit of milk, and still eat yogurt, and jarred peanut butter-all natural-no salt. Everything else is gluten free, preservative free, no soda! no diet soda! NO powdered anything. I make my own sauces and salsa's.
I eat a buttload of apples, and other fruits. Smoothies and spinach salads, collard greens, and apples get my colon moving, and I mean it empty's it, not in an explosive way either, but when I look in the bowl im like, ohhh no wonder I feel like crude, casue the bowl is full, a 2 flusher! LMAO seriously, but im for real.

You kill me Mary !!! LOL

You crack me up Mary!

Did anyone say Restricted Vitamin A !!!??

Consult your doctor if you need to limit foods that are rich in vitamin A or tyramine, which are thought to adversely affect intracranial hypertension. Your doctor may suggest that you limit your intake of foods such as beef liver and certain vegetables, namely carrots, tomatoes, sweet potatoes and leafy greens rich in vitamin A.

Because tyramine can cause blood vessels to dilate, people with intracranial hypertension should limit eating foods that contain it. These include most aged and preserved, dried or smoked foods such as pepperoni, liverwurst, pickles and pickled foods, salami, aged cheese, beer and wine. All nuts contain tyramine, as do all fermented soy products, sauerkraut, olives and broad beans


http://www.livestrong.com/article/334181-foods-and-activities-to-avoid-with-intracranial-hypertension/

Another thing that worked real well for me is the myfitness pal if you have a smart phone. I'm on a 'diabetic' exchange type thing now it's lower carbs and way more veggies than I was doing on my own. Honestly even with 100 pounds gone I still have 140 some left to go. There are some days I feel awesome. We went on vacation to Florida and my energy levels were completely different than they were 6 months ago at 40 pounds heavier, but mind you my iih was not under control 6 months ago either. My immune system is so weak still. But overall I feel like I can do so much more without letting my energy get in the way

Thanks you guys. This is great info. :) I have learned lots about IIH; more than my dr has shared and she's been reaaly helpful.

I have also heard of the Viatamin A and tyramine connection and that list of items posted, pickles, olives, nuts, aged cheese, beer, wine .... :( this makes me want to cry! I love all those yummies!

I've lost 20 lbs since Dx, and not really water... that was just a little at first, the rest I have lost slowly. And I'm at 10% loss now... no change for the IIH except that the Diamox no longer works to relieve my laundry list of really severe symptoms, and they are sending me for a shunt now.

I eat only whole natural foods as much of it organic as possible... mostly vegetables and fruits, and I include some meat (grass fed only), fish, and shellfish, and raw milk/raw milk products in limited quantities. No grains, no sugar, no legumes, no GMO anything. Nothing out of a box or can o package. I don't add salt to food.
Salt in my diet gives m an immediate wake up call... HUGE head ache increases, whooshing increases, I swell... general misery.
For beverages I allow myself one coffee per day, and use seriously premium espresso beans so that I can savor it. Other than that I drink iced water with lime, and a sprig or two of sweet spearmint I grow in my own yard. Out in a restaurant, when I manage to go out, I have unsweetened iced tea with lime... lemon if I don't have the choice.

As far as vit A, no one has warned me off it... but honestly... if I'm going to have a TREAT and a baked sweet potato will fit the bill instead of something worse... I'm eating the sweet potato. I don't think I'm eating particularly high in A in general though. All I have left is veggies/fruits... I'm not knocking half of them off the list too.

And Tyramine... most of those foods are SERIOUSLY salty. NOT eating them. As a matter of fact I used to love olives, but since reducing my sodium intake I can't eat them. I tried to have on that was in a salad I was eating out on day and the saltyness of it felt like it was literally burning my mouth. =(
Nuts I have rarely and in moderation.
I no longer drink alcohol at all.... those are words I NEVER thought I'd type.